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Not sure about my doctor's diagnosis: Post-infectious IBS?
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Not sure about my doctor's diagnosis: Post-infectious IBS?

I'm 25, female. maintained a healthy lifestyle and did't have major health issues until about a year ago.

In 2010, I went to South America and got sick, I had a GI infection for the first time ever. Vomiting, stomach pain, lowgrade fever, and weakness. Took anti-biotics. I've been tested for parasites and tropical illness, all tests were negative. Could't have oil or alcohol for a couple months before feeling back to normal.

I was fine until my menstrual cramps got so bad I ended up at the ER. I was told I had Endometriosis and Ovarian cysts that would require surgery. Pretty shocking.

Shortly afterwards, I suddenly came down with viral gastritis, was in hospital for 3 days. It never really went away. I had stomach pain (either everything was being squished together or expanding, pain was mostly upper and upper-right quadrant), bloating, indigestion, nausea, acid reflux, malaise, weakness, food sensitivity and rashes for months. Endoscopy showed chronic gastritis, a hydrogen breath test showed fructose intolerance. I took nexium and switched to prevacid. It's only mildly effective.

Around June I started getting really tired. It became difficult to get through the work day, sometimes I had to leave early and would go to bed as soon as I got home. A blood test showed my ferretin was at 11.

End of July I had laparoscopic surgery to remove the ovarian cyst. No complications. I was told recovery would be 2 weeks. Well about 5 days after the surgery, my fatigue suddenly worsened even more, and more, and more. My ferretin was at 8 by late august. I couldn't return to back work. I was diagnosed by my gastroenterologist with post-infectious IBS and given iron supplements. The "post-infectious" part makes sense to me, but "IBS"??? I don't get diahhrea or constipation, my symptoms are gastric, not in my bowels. But my doctor insists it's still IBS. Does that make sense????

Its now been 2 months since I started taking iron pills. My ferretin is back to 11 (it's still low however, normal levels are usually above 20) and my hemoglobin is way high. The hematologist says I should have gotten my energy levels back by now, but nothing has changed! I'm STILL not back at work, I'm in bed ALL day, I walk half-way around the block and I am out of breath!

No doctor can account for the cause of my fatigue, I can't stand it anymore, its destroying my life! What couldit be??? Is it really post-infectious IBS?
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5 Comments Post a Comment
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Avatar_f_tn
i have had some of your issues but not all in the year just past, had stomach bug in january 2012 and then ovarian cysts found end april after acute pain admission, same had been suffering bloating etc but like you no constipation or diarrhoea, had cyst out at end august 2012 and then two kidney infection severe tiredness and abdominal symtoms (symptoms) that had never gone away (no endometriosis found during lap and cyst removal), basically towards end of  december with desperation a colleague suggested cutting out lactose and dairy, within a few days noticed difference (less gurgling in stomach, still bloating) after a week i was sleeping better, aches and pains in arms leggs getting better, walking better, headaches subsided, am now nearly four weeks on and although still have bloating have seen huge improvement, am a mother of two young children and had been a struggle to get out of bed and wanted to go to bed in afternoon (but couldnt) before this. i have now seen a very well qualified dietitician, who thinks post infectious ibs, am on an exclusion diet and also high strength probiotics to get the good bacteria back in gut. have lost a stone in weight and she thinks this all been down to the fact my body not been absorbing what i need from food due to the changes in my gut system and bacteria out of equilibrium.
anyway i have no idea if this could work for you but if you feel as bad as i did its worth a try, so try and lactose and dairy free diet for a bit.
this is a condensed story of the past year but covers the basics
p.s i was like you i thought ibs was alternating diarrhoea and constipation but the term ibs covers everything that doesnt have organic (not sure if that right term) cause e.g investigation normal like endoscopy, colonoscopy etc e.g they can find obvious damage to gi tract and also ibs should meet the official criteria but this is probably less necessary more the fact that no other damage cause found to explain symptoms
good luck
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1927233_tn?1326673987
Hi, thanks for your post. It definitly sounds like we've been through something similar.

I'm glad you found out your condition was related to lactose and dairy and you are doing better now! I don't normally consume dairy or lactose, I never drink milk or eat ice cream, and rarely eat cheese, yogurt or butter. My diet is already very low in dairy products. I also have been tested for food intolerances. I am not intolerant to lactose, glucose or lactulose, however I discovered that I am intolerant to fructose! Minimizing fructose has helped relieve much of my bloating and pain after I eat, but the rest of my symtoms (symptoms) remain.

Overall, I've begun to see improvement since my last post. I've been able to be active for more hours in the day, and getting less gastric symptoms. However I still need to tae it easy: anytime I try to push myself a little bit, it backfires and I end up needing 2-4 days of bedrest to recover!

One symptom I did not mention above is that since my surgery I have been getting low grade fevers and night sweats. I wasn't concerned at first because we were having a record-breaking hot summer, but now that it's -29 outside and I still wake up in sweats in the middle of the night, the doctors are concerned it could signal a hormone imbalance, or a lingering virus. I will be getting a hormone test in February...
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4682981_tn?1357947629
The food we eat can cause all sorts of symptoms. Your digestion is an amazing process that literally sends the food you eat to all parts of your body. So it does make sense that IBS can be your problem for all your symptoms. IBS is caused by food intolerance. The main culprits are DAIRY and GLUTEN... gluten has been known to cause many many diseases. I had no digestive issues until a stint of medication after contracting Tuberculosis while living in Nunavut. Since then I was plagued with problems.. they said it was IBS.. Honestly you probably had a problem with the foods your whole life but the virus just sent your body into overdrive. Made it way worse. The body has a funny way of telling us something is wrong. When you start having a bunch of issues all at once, none of them seem related but it's just one thing after another.. it is usually a food intolerance, or a number of food intolerances. Do a paleo diet or low carb, cut out gluten/grains and dairy for a few weeks, see if it helps. You'll have to cut them out completely though or you may not notice any change.. Do a search online of your symptoms and paleo and see what shows up, you'll be amazed...
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Avatar_f_tn
I moved to India a year ago and ended up contracting multiple intestinal infections including Giardia.
After receiving poor treatment in India for 6 months, I went back to the UK  and was given antibiotics which cleared the infection. I then had a colonsocopy which was all clear and normal. I now have Post-Infectious IBS (I'm into the 9 month of it) and I find that sometimes I'm okay and sometimes I'm not. For me it depends on climate and sleep. If I don't sleep or it's too hot, then I get diarrrhea which over the past year has resulted in my sodium and potassium deficiency. I cannot handle processed foods of any kind, wholewheat, lentils, tomatoes, dairy any fats and the list goes on. I'm not sure how long PI IBS is supposed to last but for me, I feel that it has simply become IBS. After diagnosis, I feel that I've just been left to get on with it. The specialist I saw said that one day I'll wake up and I'll just be able to eat normally again! If only!

Hope you get well soon.
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1927233_tn?1326673987
Thanks for posting!

I think IBS is life-long, though it can get much less severe over time, andthen relapse. Even though I am fructose intolerant, I've noticed it's actually foods high is fiber that give me the worst stomach pains. And onions are pretty bad too. But as long as I eat fruits and veggies in moderation, and with another food, it doesn't seem to give me any reaction.

As for my persistant fatigue, my ferretin is now up to 20, and my hemoglobin is normal, so that doesn't explain it. I've had my cortisol levels tested, as sometimes low cortisol can cause fatigue but... my cortisol is actually HIGHER than normal! I don't have any symptoms of cushing's though, so I think the likely culprit is psuedo-cushing's caused by hormone therapy (I must take estrogen for my endometriosis).

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